Showing posts with label PD. Show all posts
Showing posts with label PD. Show all posts
Wednesday, December 11, 2013
Page one of a new comic: A Day with Parkinson's Disease
Hi folks, here is the first page of a new multi-pager. I don't know yet how long it will be, but multi, for sure. The plan is to take you through what a day is like with a chronic debilitating and progressive disease that undermines your ability to do just about anything physical. Think of it as positive wallowing, turning frustration, anxiety and misery into art. Ready? 3-2-1- WALLOW!!!!!
To see the entire day sequenced in one post, look here
Wednesday, July 27, 2011
Announcing a New Virtual Gathering Place For Isolated Alaskans With Parkinson' s Disease
It bugs me that there are undoubtedly Alaskans out there with Parkinson's Disease who have no support group nor the ability to travel or live where there is one. As far as I know, the only group is in Anchorage. (Is there some group out there I do not know about? I would love to be corrected about this!)
As an experimental attempt to get at this problem I have created a new facebook page. So you're off in a remote corner of Alaska and dealing with Parkinson's Disease? This is the page for you. Post your questions and we'll try to get answers. Let us know where you are so that you can connect with others in your area.
Come on in, the stove is warm, and so is the welcome.
Friday, November 20, 2009
Pete's Parkinson's Portraits: Adolph Hitler

Is it true we share our affliction with arguably the worst person ever? While nobody searched for or found conclusive proof in an autopsy, there is convincing evidence that the Nazi leader did have Parkinson's. Further, there is interesting speculation that the disease may have cost Germany the war.
In an article from Pub.med, maintained by the National Institutes of Health, the authors write:
"It has been proved that Adolf Hitler suffered from idiopathic Parkinson's disease. No indication for postencephalitic parkinsonism was found in the clinical symptoms or the case history. Professor Max de Crinis established his diagnosis of Parkinson's disease in Hitler early in 1945 and informed the SS leadership, who decided to initiate treatment with a specially prepared 'antiparkinsonian mixture' to be administered by a physician."
As to how the disease affected Hitler, and hence the outcome of the war, the argument is outlined by the BBC as follows:
"The dictator suffered the disease, and the mental inflexibility associated with it could have been what led to his slow response to the D-Day landings in Normandy in 1944, researchers said at the International Congress on Parkinson's Disease in Vancouver.
Dr Tom Hutton, a neurologist who co-authored the study, said Hitler was suffering physical and mental symptoms of the disease, but his aides kept it secret.
He said that by the time of the Normandy landings, Hitler had suffered the disease for 10 years and would have had problems processing conflicting information - hence his initial refusal to allow Panzer divisions to move to the site of the invasion.
Hitler is said to have been convinced that the Allies would launch their attack at Calais."
Again we are forced to confront the ironies of Parkinson's Disease. Consider this, the stricken Fuhrer would not have survived the process of selection in which the weak and sick were culled from the death camps. With his symptoms aggravated by stress he would have advertised his own weakness and perished for it.
And this: For once, the illness does something good, helping to bring down a mass murderer and changing the course of history for the better. Yet one of the more acceptable traits of the disease, its slowness, left him in place long enough to ensure the massacre of millions of innocent Jews, Gypsies, homosexuals and others deemed subhuman or troublesome. Parkinson's Disease crept bit by bit through his system idly allowing Hitler to cause the deaths of millions of soldiers and civilians from all sides, and to leave Europe in ruins. Even when it does right, Parkinson's does it wrong.
Sunday, September 20, 2009
Sunday, March 29, 2009
Wednesday, July 30, 2008
Sign #237 That there is something amiss with health care as we know it:
Monday, June 30, 2008
Carping Tunnel-Vision Syndrome

ABOVE: Shipwrecked by Parkinson's Disease
As a cartoonist, I carp for a living. One of the hazards of my job is that the first thing I do each day (after the ritual swallowing of pills and a trip to the bathroom) is look to see what the worst news is in our paper. From the Supreme Court to the lowliest local pol, I begin my day with the malefactor who did the most damage since the last time I checked. (By the way, did you notice that I'm ALREADY carping here? I'm a natural!)
This is like startin' your mornin' with a steamin' hearty bowl o' hot, nutritious worms. After a while it colors your attitude toward humanity. God only knows how the reporters who cover the courts and child welfare avoid becoming misanthropes, and I suppose many do.
Paradoxically, Parkinson's Disease has been the antidote for my case of mild misanthropy. While I loathe having this disorder, it has provided a mirror image alternate to the viewpoint brought on by watching the bozo parade.
Instead of dwelling amid the latest creative disasters of the inept and the evil, I'm a Gulliver in reverse. Being shipwrecked by Parkinson's Disease has fetched me up gasping and coughing on the Island of the Caring and the Competent.
It is another world. The inhabitants there are the likes of our friend Betty. Betty lost her husband to Parkinson's Disease. As far as I am concerned enduring that earned her a free pass on ever having to face PD again. Betty disagrees. She has volunteered for years as the voice of experience to care partners who need light on their lonely road. She often leads separate sessions for them during our monthly support group meetings. It is one of the most important services our little Parkinson's club offers.
It is the world of Dr. Dave Heydrick, a neurologist with Parkinson's who has put his intelligence, humor, charm and discipline into the mission of uncovering all he can about coping with PD and passing his learning along to the rest of us. Dave is a man who provides those of us drafted into this battle with the precious and indispensable commodity of credible hope.
It is the world of Bill Bell. When Bill's mother got diagnosed, Bill became her advocate. On finding so little support for area people with Parkinson's and their families, he went on to become an advocate for everyone in the Pacific Northwest. Smart, and an unusual combination of the good-natured and the hard-nosed, Bill put his talent and energy into running the Northwest Parkinson's Foundation. His newsletter now goes around the world, but he still seems to know and take an interest in every person with Parkinson's in the Northwest.
It is the wider world of researchers and doctors who devote amazing creativity, skill and discipline to taking care of patients and taking this disease down. To read about deep brain stimulation or gene therapy is to glimpse what seems like science fiction come alive.
I can't say I'm happy about the circumstances that brought me to this place where the people are busy trying to make the world better, and succeeding at it. But I'm amazed and grateful that it exists.
Thursday, June 5, 2008
My Own Cato

Clouseau moves warily through his silent apartment. His sixth sense tells him danger is poised to explode, and it could come from anywhere. Every narrow hallway, every closet door, any hidden space large enough to conceal a crouching man may contain Cato.
Cato has been commissioned by Clouseau himself to stalk and attack the inspector without warning, and when he least expects it as a form of training. Just as addled as his adversary, Cato lies in wait. But where? Surely not the refrigera...
As the dooor cracks open Cato erupts from inside in a shower of frost and fury! He rains blows on the hapless detective with icy hands. Havoc, treachery and mayhem ensue, which both men seem, perversely, to enjoy.
CUT TO...
Pete wanders obliviously through his house. Every doorknob, every corner on a counter top holds the potential for sharp and unexpected pain as his body responds to signals from his brain that cause exaggerated dance-like movements in his limbs. The complex and unconscious calibrations that we all make in the banal act of passing through space are thrown off in the interplay between disease and medication.
But when the meds kick in, it's easy to forget that. Why? Because, darn it, it feels so great to move! Until an arm swings wide and slams into something hard or sharp. Then it feels great to spout profanity with your amplifier up to 11.
It's painful and exasperating to suffer one's own unintended violence. But let's face it, it's also funny. To have Parkinson's Disease is to live a life of improv slapstick. Congratulations, you've landed both leading roles, You're Cato and Clouseau.
Wednesday, May 21, 2008
Encounter with the supreme identity thief

Remember the "Me Decade"? That's what writer Tom Wolfe christened the 1970's . It was fashionable at that time to attempt to "find yourself". This was a common pursuit of the day, and a weird one. It conjures the idea of some tragic mix-up in the maternity ward in which your true self went home with the wrong family and then moved across the country without leaving a forwarding address.
Eventually it would fall to the strong and the brave to go out and track their fugitive self down, like an escaped con. As with any great quest, this one was fraught with difficulties. It's a given that your real self would be found somewhere more exciting and exotic than wherever you were at the time, but where? And how would you know when you found your true self? What if you found somebody else's true self and mistook it for your own? You might live the rest of your life as someone else, and never know. Which for some might not be a bad idea.
Most people gave up or got over it by the mid eighties. And it was never much of a problem for me. I always defined myself as an Alaskan, and a cartoonist, and later expanded into husband and father. For the most part, what I did was who I was.
Then came Parkinson's Disease, the identity thief supreme. I was a guitar player who didn't play the guitar, a cartoonist who was struggling to draw, a father who was too tired to cook or to even stay up and share a movie, a husband who was cranky and listless. (See my pal, the ogre here)
"Finding yourself" seems like a foolish game. Losing yourself is terrifying.
Eventually diagnosis and medication restored much of my original drive and personality. But Parkinson's is a moving target, and medication only approximates what my friend Dr. David Heydrick calls "The exquisite precision" of the dopamine controls of the human brain. And as we know too well, the medication eventually becomes as problematic as the disease.
But, for now, the person I think of as the real me, does glint out occasionally and briefly, from between the manic, nattering chatterbox I am at the crest of my dose and the semi-paralyzed zombie I become at the ebb. Like a canny performer, he always disappears before wearing out his welcome, leaving Chatterbox and Zombie Man in a state of anticipation about the next appearance .
The question isn't "Who am I?" or "Where am I?" It's "When am I?"
Tuesday, April 29, 2008
Handy Doctor's Guide of Stupid Things to Avoid Saying

Don't get me wrong, I trust and like my doctor. Otherwise I would find somebody else. But there is an appalling number of stupid and cruel remarks related to me over the past few years that fellow patients have heard from their doctors. These patients and their loved ones are often bitter about these thoughtless wounds, and as you read some of the remarks below, you will understand. (Note, these are paraphrased from the original sources.)
The reassuring physician, answering a patient's question about whether he would adjust to a new medication: 'You will be dead before your body gets used to it.'
The reassuring physician II: 'You have Parkinson's, but at your age something else will pick you off before it becomes a major problem.'
The careful observer: 'Come back next month, you are no worse than the last time I saw you.' In actuality the person in question was so much worse he was nearly immobile.
The blithe optimist: 'Let's give this new medication a try, there will be no side effects.' The patient suffered more from the new meds than from his Parkinson's Disease.
The cheery prophet, on being informed about a patient's positive mood and symptomatic improvement following exercise: 'That'll disappear in a few years.'
The gimlet-eyed skeptic: 'That's not a real tremor, you are making your leg do that.'
Others have told me of being given their diagnosis through a burst of laughter, of being given the shove test by several doctors without a word of explanation, and of being locked up by a crew at an emergency room, accused of taking drugs, and told that they were going to remain locked up until they were ready to tell what they had taken.
I am grateful for the hard work of smart, dedicated people who have mastered the techniques and knowledge that keep me functioning at the level that I maintain. I appreciate the difficulty of a general neurologist who must treat everything from migraines to MS. And I can imagine the chronic frustration that must come from being forced to manage the decline of people you wish you could cure. Throw in the many failings of the health care system as we know it here in the U.S. and I can see why both of my parents, one a surgeon and the other an anesthesiologist, discouraged their children from a career in medicine.
I grant all that. But it will take someone smarter than me to understand why people who are enduring what can't be changed should be subjected to additional pain that can be easily avoided.
Thursday, March 27, 2008
R.I.P: The Ogre Who Says "No."

Who was the Ogre Who Says "No."? Well, for quite a while, he posed as me. This ogre alter ego crept into my character with patient stealth. The Ogre Who Says "No" set up shop in my head masquerading as the voice of reason. When someone had to play the heavy, the adult voice of delayed gratification, the Ogre was resigned but resolute, and stepped in.
He could be counted on to point out why we should stay home instead of going out, why we didn't need pets, or why we weren't saving enough. The Ogre phrasebook was full of lines like "Sure, but..." and "Do we really..." The Ogre was fluent in several languages because he only had to master one word. Nein, nyet, non, no.
The ogre was no dummy, and often had a point. The truth is that there are always good reasons to say no to just about anything. And that definitely includes saying "no" to the Ogre, who was a pain in the ass to live with. The Ogre had no joie de vivre, and without joie, vivre is thin gruel.
Can I blame Parkinson's for the coming of the Ogre? Probably not entirely. But the Ogre was not me. My Dad even noticed and was disturbed enough to contact my sibs asking if they had noticed that I had lost my "Ebullience." And given that the Ogre keeled over and died around the same time I got up to snuff on my Parkinson's medications, it's hard not to associate the two.
We buried the Ogre in a simple pine box. We never leave flowers. He wouldn't approve. But we do visit his grave now and again to honor him, and to reflect on his last words, carved on the cold granite of his headstone: "Carpe Diem".
Tuesday, February 26, 2008
You can do more than you think you can

ABOVE: Homage to Sylvain Chomet
Alzheimer's is the forgetting disease, but there is something that Parkinson's keeps making me lose track of: The fact that I don't have to quit doing what I enjoy because of PD. It's true that lots of my old skills don't measure up to their former levels, But as G.K Chesterton said, "Anything worth doing is worth doing badly." This was a defense of amateurism, but by all that is shaky, it also applies to living with PD.
I love riding my bike, I used to do a regular 22 mile round trip commute on our wonderful network of Anchorage bike trails. When I was diagnosed with Parkinson's,I was especially glum about the prospect of losing my ability to balance. No balance, no bike. I kept at it for awhile, then had to sit out most of a rainy season. When the next season rolled around I talked myself into the idea that I couldn't ride anymore.
I was working at home one day a little while after I reached this dispiriting conclusion. My son had driven to school and Pam had taken the Jeep to work. The phone rang, and when I picked up, I was told by the head of security at my son's high school that we had "A Situation" with his car. She explained that a roving security guard had peered into our Subaru and spotted a weapon. Said guard had the car staked out and could not leave until I dealt with the situation.
Calling me to let the guard return to "roving" mode was actually plan "B". The original idea was to jerk my son out of the middle of his AP economics test and have him retrieve the forbidden implement of destruction. Sanity prevailed, in the form of an alert assistant principal who knew that this kid would not be a threat to the school if he had a bazooka in the car. (Come to think of it, the car itself was a bigger threat, but he can explain that to you himself here)
Which was how I ended up telling an extremely unhappy head of security that, having no car, I would walk right up and take care of things, but since I had Parkinson's Disease, it would be about 45 minutes. This naturally left her delirious with happiness. At least I think it was happiness.
I trudged into the gloom of the garage to put on my shoes and the dull gleam of the gold paint on a friend's road bike caught my eye. It seemed worth a shot. It was.
I rode uphill all the way to the school and confiscated the weapon. I know you've been wondering just what it was. Machete? Switchblade? Gravity knife? Nope. It was a tiny folding saw with a 6-inch blade and a bright yellow handle that my dad had given us in case we broke down in the middle of a forest and had to hack it down to get back to civilization, or, if we were feeling truly ambitious, use it to start a whole new civilization. Which seems like a better idea all the time.
My job done, I signed a few autographs kissed a few babies, rescued a treed cat and rode home, delirious with happiness. I was back on a bike.
Friday, February 22, 2008
Urgent bladder holding on line one

OK, who wants to talk about incontinence? Me neither. Let's come up with a nice, non-threatening euphemism. Doctors often have a strangely poetic way with words,cue the doctor! And the doctor says... "Urgent bladder".
That's much better. It sounds like you're on a dangerous and important mission. Or at least, your bladder is. Unfortunately, this selfish little organ is not the type to stand up well under duress, and when the going gets tough, the bladder gets going.
Several ways of dealing with this little bully come to mind:
1.) Not drinking Advantages: Nothing in, nothing out. Disadvantages: Dry mouth, dehydration, premature death
2.) Adult diapers Advantages: Relive your childhood. Disadvantages: Humiliation, self-loathing, reliving your childhood.
Great. What we really need here is another option. Fortunately I just happen to have one. Voila!
3.) Kegels
Those of you who were paying attention in childbirth class might remember these. Kegels are taught to expectant mothers to strengthen muscles that are stretched during delivery. While flipping through a promotional pamphlet from On Health, I noticed that they recommend this exercise for both Women and men to control urinary problems. Those of you who paid attention in childbirth class can stop reading now. For the rest of you...
Here is how to Kegel, adapted from wikiHow
Locate pelvic muscles. You can do this by stopping the flow of urine when you are going to the bathroom. Then start it again. These are your pelvic muscles. Do this only to find the muscles. It's not healthy to stop and start urinating.
Tighten and relax these muscles daily. Try and work up to 100-200 times a day. Or choose a certain thing to associate with them - for instance, kegel at every red light you come to, or every time you open the fridge.
* Get into a comfortable position. You can do these exercises sitting in a chair or lying on the floor. Relax buttock and tummy.
* Imagine you are trying to hold back urine; lift and squeeze from the inside. Try and hold that action for the count of three.
* Imagine that you are trying to stop yourself from passing wind; lift and squeeze your anus and hold for a count of three.
* Combine those two movements into one fluid movement. Starting from the front, lift and squeeze, don't let go, follow through to your anus, lift and squeeze. Relax. Hold this position for 10 seconds.
* Rest for 10 - 20 seconds and repeat.
* Work towards 12 strong holds and as it starts to become easier, try holding for longer, and repeat as many times as you can.
Next post: Aerobic Kegeling!
Thursday, February 14, 2008
The greatest PD love story ever told

(Above, Abelard notices a twitch in his finger as he prepares to dispatch a valentine to Heloise)
I know what you thought when you woke up this morning: "Hey! Valentine's day! That means romance and Parkinson's Disease!"
You didn't? Well, you will from now on. Because one of the great romances of all time was conducted in the 12th Century between Abelard and Heloise. Abelard is believed to have had PD.
Of course there was no way to diagnose him, and PD was not even identified as a disease way back then. But having a disease that wasn't even "invented" yet was just one more trail for him to blaze. Abelard was always way ahead of his time- A Renaissance man living in the Middle ages.
Here is a good look at his life and accomplishments.
Abelard was a formidable wit, a teacher, a theologian, a musician, and as a debater, reputed to never lose an argument. He is held today as likely the foremost logician of the Middle ages and was a champion of reason.
But when it came to love he was so logical that when he was smitten by the brilliant and beautiful Heloise, he engineered a job as her teacher, and was castrated by her uncle's goons when the whole sorry mess hit the tabloids,
Heloise went off to a convent and Abelard spent the rest of his life getting in and out of trouble with the Church. Among his pupils were kings and three popes.
The two were to carry on one of the most famous exchange of love letters of all time, setting a standard for doomed lovers equaled perhaps only by those hormone-addled (and fictitious) teens, Romeo and Juliette.
Sure, many a man has lost his heart to the woman of his dreams, but answer honestly guys, how many would toss in their testicles, too?
Monday, February 11, 2008
Anybody seen my comfort zone? (part two)
Shortly after my initial diagnosis I got a visit from an old friend. A person of warmth and intelligence, he is someone whose judgment I trust. He predicted a fruitful, if difficult time, based on experience with others who had faced severe illness. I appreciated the comfort offered, but deep down, and for that matter, from right below the surface, I filed this under "Yeah, right."
Six years down the road my friend is looking damn clairvoyant. Since my diagnosis, I have been surfing my strongest creative roll, period.
But first, I had to slam into a wall. Discomfort in a literal sense began to hedge me in. Repetitive strain problems that I have no doubt were Parkinson's driven arrived at the point where my resourceful and bright ergonomics doctor ran out of ideas that would keep me drawing.,
This was a double blow, first because drawing has been a large part of my self identity since I was a second-grader. And second, it has been my living for 25 years. I wasn't ready to give it up to PD.
I had one last reed to grasp. At work we are badgered to sit in an ergonomically correct way- something that I slid by as the rare bird who didn't sit at a keyboard. I knew that there were electronic drawing pads that would enable me to approximate this platonic ideal of posture while drawing. Using the pad, I can keep my elbows in a natural comfortable angle while holding my head level to look a computer screen, where drawings unfold in a way that is magical.
When I pitched this idea to my doctor, a look of relief crossed his face. He smiled, and replied that the idea would work. And so far, it does.
Drawing while watching the screen instead of your hands is no big trick. When you take classes, you are taught to draw while looking elsewhere. Mastering the program that allows you to draw on the screen (I use Photoshop) was a different story. But that is where I really got lucky. My wife is not only a Photoshop ace, she is also a patient teacher.
Whenever I got stuck, bewildered, frustrated or exhausted, Pam would sort things out. Eventually I arrived at my goal of being able to produce work on the computer that was indistinguishable from my pre-computer cartoons.
When I arrived at that lofty peak, that dearly bought goal, that ultimate moment when I finally was able to reproduce the old style, I was rewarded with a moment of clarity. I realized that recreating my old look was was a stupid idea.
Take a two thousand dollar machine, equip it with some of the most sophisticated software available, and turn it into a fifty cent pen. Brilliant, wouldn't you agree?
Since then I have been on a full-scale creative bender, exploiting the color, texture and effects that the computer makes possible. In the past year I have even been able to add in sound and motion, thanks to the animation program, flash. To see for yourself, take a look at the animation posted below.
The world is accelerating while my body is braking. But at least my drawings can move.
Six years down the road my friend is looking damn clairvoyant. Since my diagnosis, I have been surfing my strongest creative roll, period.
But first, I had to slam into a wall. Discomfort in a literal sense began to hedge me in. Repetitive strain problems that I have no doubt were Parkinson's driven arrived at the point where my resourceful and bright ergonomics doctor ran out of ideas that would keep me drawing.,
This was a double blow, first because drawing has been a large part of my self identity since I was a second-grader. And second, it has been my living for 25 years. I wasn't ready to give it up to PD.
I had one last reed to grasp. At work we are badgered to sit in an ergonomically correct way- something that I slid by as the rare bird who didn't sit at a keyboard. I knew that there were electronic drawing pads that would enable me to approximate this platonic ideal of posture while drawing. Using the pad, I can keep my elbows in a natural comfortable angle while holding my head level to look a computer screen, where drawings unfold in a way that is magical.
When I pitched this idea to my doctor, a look of relief crossed his face. He smiled, and replied that the idea would work. And so far, it does.
Drawing while watching the screen instead of your hands is no big trick. When you take classes, you are taught to draw while looking elsewhere. Mastering the program that allows you to draw on the screen (I use Photoshop) was a different story. But that is where I really got lucky. My wife is not only a Photoshop ace, she is also a patient teacher.
Whenever I got stuck, bewildered, frustrated or exhausted, Pam would sort things out. Eventually I arrived at my goal of being able to produce work on the computer that was indistinguishable from my pre-computer cartoons.
When I arrived at that lofty peak, that dearly bought goal, that ultimate moment when I finally was able to reproduce the old style, I was rewarded with a moment of clarity. I realized that recreating my old look was was a stupid idea.
Take a two thousand dollar machine, equip it with some of the most sophisticated software available, and turn it into a fifty cent pen. Brilliant, wouldn't you agree?
Since then I have been on a full-scale creative bender, exploiting the color, texture and effects that the computer makes possible. In the past year I have even been able to add in sound and motion, thanks to the animation program, flash. To see for yourself, take a look at the animation posted below.
The world is accelerating while my body is braking. But at least my drawings can move.
Wednesday, February 6, 2008
Anyone seen my comfort zone? (part one of two parts)

For those of you out there who fear getting lazy, settling into a rut, or becoming complacent about the little things that make life so rich, allow me to suggest Parkinson's. It'll force you right out of your comfort zone.
I hear you murmuring out there "But... am I QUALIFIED for PD? Am I good enough? Can I go mano-a-tremoring-mano with a disease that will require of me resourcefulness, patience, humor, humility, the help of those that love me, the patience of those that encounter me? And let's not forget the sheer dinero, the moolah, the swag to afford those pricey pills without which I look like a reject from an casting call at Madame Tussaud's Wax Museum... can I do all that?"
Don't sweat it! Anyone can have Parkinson's, even teenagers. And don't worry, there is plenty of PD to go around, and more coming soon. And I'm talking to you, you temporarily able Boomers. The average age of onset is 60, so what does that tell you? Ready or not, here it comes.
If diseases had slogans, Parkinson's would be "Disease of the Future." Just check the age curve of the United States. Heck, I'll do it for you. Here we are..
According to the State of New York Long-Term Care report, the population of citizens in the U.S. 65 or older will grow from 11% to 20% between 2000 and 2030.
It'll be a PD population boom. Which at least means we'll be a potent political force. If someone will be good enough to take us to the polling place.
Friday, February 1, 2008
The Mask

(Cartoon by Peter Dunlap-Shohl, special thanks to the Gord Carley archive! Click to enlarge)
Anyone can see some of the damage Parkinson's disease visits on those who have it. Tremor and shuffling are painfully obvious. But there is another set of problems spawned by what you don't see.
With the loss of control of facial muscles we also lose a significant chunk of our ability to communicate. Instead of expressive smiles and frowns, we present a deadpan, blank mask that unnerves others.
Much of the sense of what we all say is not in the voice or words, but in the subtle visual cues and signals the face sends. We all interpret speech in the light of what we read in a person's expression. People with Parkinson's can slowly lose the ability to enhance communication this way without even knowing it.
Think about the problem of misinterpretation of e-mail. The sender composes a message in which the words seem clear as the send button is pushed.
The recipient looks at the cold, expressionless type on their screen, and without the guidance of the visual and tone cues that we all use to correctly interpret meaning, assigns meaning that isn't there. Often the missing meaning is misread, and the interpretation negative.
Then consider the way we get around this problem. We insert little faces that clarify our intent ;-)
This is exactly what those of us with Parkinson's Disease are not doing in face-to-face conversation. We are sending spoken email, without the emoticons :-(
Instead of this :-) , or this :-( , what we send is this :-| . Nothing but :-|
To complicate things further, we are often unaware that we are not sending the proper cues. And worse, as people look for these cues and cannot find them, they get frustrated, confused and eventually angry.
Once while taking care of some support group business at a bank with my friend Lory, I sensed rising irritation in our banker. I was at a loss as to the cause, but then realized she was interpreting our Parkinsonian lack of expression as anger. I stopped the rapidly deteriorating meeting, and explained our featureless expressions.
The change was immediate and dramatic. She went from grim to jovial in seconds flat. And Lory and I, having solved the mysterious problem, were elated :-|
Saturday, January 26, 2008
The Spandex Angel

I was vague about what lay in store after I got my diagnosis of Parkinson's disease in early January, 2002. But I knew it was bad. Preliminary forays to doctors and on the Web were daunting. I could look forward to inexorable progression of a creeping paralysis of voluntary movement. The loss of the ability to walk, to speak, to draw. A disease treatable with medicines that work for awhile, and eventually bring on side effects as difficult as the illness. This is what I was told was coming.
But the last thing I expected was the visitation of the Spandex Angel. After decades of struggling with God, I'm a religious skeptic. So I was taken utterly by surprise when a voice that spoke without words but with unmistakable intent and intensity came to me, and said "You have to exercise. If you don't, your downward spiral will be even steeper and more drastic."
As it turned out, the angel knew whereof it spoke. As I poured on the exercise I noticed temporary improvement in my symptoms. And there are a growing number of exciting studies like those done by Dr. Jay Alberts of the Cleveland Clinic that show definite symptomatic relief after intense exercise. Here's an excerpt from the clinic's web site:
"Dr. Jay Alberts, a neuroscientist at the Cleveland Clinic in Ohio, says in the past, exercise hasn't really helped patients. But by pushing them out of their comfort zone and forcing them to pedal much faster than they would normally, symptoms can improve more than they do from drugs.
'After eight weeks of exercise, symptoms have improved 30 to 35 percent for patients, which is a pretty dramatic improvement,' Alberts explained."
What's more, there are other studies that show possible neuroprotective effects. And exercise is a proven mood elevator. That's significant for those of us who have PD, which is often accompanied by depression.
Plus exercise is cheap, rarely results in an overdose and doesn't have to be imported from Canada. And no forms to fill out or file. One note: It is wise to consult your doctor before ramping up a serious exercise regime.
But take it from me, take it from Dr. Alberts, or take it from the Spandex Angel, "YOU GOT TO MOVE!"
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